When your son faces challenges in dealing with everyday life, facing a heart procedure is tough
At a parents’ meeting in my son’s school last January, there was a discussion about the need to include programmes to help students who need to have bloods taken in hospital. This was not a parents’ meeting at a mainstream school, but at Abacas, one of 12 special schools for autism in the State and my autistic son, Askar (then 10), was due to have his first heart procedure in the following months.
It was hard to conceive of how a child who has difficulty getting his hair cut, coping with noisy environments, dental treatment or having bloods taken, was going to cope with a hospital stay and a significant procedure. We needed all the help and advice we could find, as well as a plan to ensure that when the date arrived, everything would be in place, so that staff could concentrate on the procedure, rather than on Askar’s disability.
We were lucky to have specialist counsellor with Heart Children Ireland, Dr Deirdre O’Neill. While O’Neill initially helped with our emotional preparedness, we were able to benefit from her former experience as psychologist with the cardiac department in Crumlin. Her knowledge of the hospital structure led to contacts and meetings with psychologist Catherine Matthews, clinical nurse manager at the cardiac department Fionnuala Gardiner and Deirdre Corcoran, who was responsible for booking surgeries into theatre.
Juliet Quinlivan, the clinical director at Askar’s school, prepared a short report on Askar and unfamiliar environments, which became a blueprint for our discussions about the potential challenges of his stay.
This included very practical steps to be taken to prevent Askar’s access to water on the morning of the procedure (he can drink litres in jig time from any available sink), to his difficulties around high-pitched noises (babies and toddlers’ cries in particular) and how to secure the bandage on Askar’s groin post-op, as he would be certain to try to remove it.
Psychologist Catherine Matthews drew up a report on all of the challenges discussed at this meeting along with recommended actions and circulated it to key professionals who would be involved.
Familiarisation programme
While in Crumlin, I got to visit the type of room Askar would stay in, saw the theatre where the procedure would take place and got to take away cannulas (Freddies), blood pressure cuffs and other hospital equipment, so that Askar’s school could set up a familiarisation programme for him in the weeks preceding the operation.
Askar’s own understanding of what was going to happen to him was limited to understanding what hospitals are and that various investigations would take place (understood very simply as “checking his tummy” and “pinches on his arm”), but he didn’t have any concept of staying there overnight or of having a procedure.
July proved to be a very stressful month, with the procedure being cancelled a number of times, and Askar was finally rescheduled for surgery on September 11th.
After arranging for our daughter, Ayesha, to stay at her best friend, Emily’s, we arrived at St Bridget’s Ward the afternoon before, armed with iPad, DVDs and books. It was so reassuring to meet familiar faces such as Fionnuala Gardiner on the ward.
To say that all staff in Crumlin had taken on board Catherine Matthew’s report was an understatement. They were amazing. Nothing further had to be explained about Askar’s disability, which left us to focus on Askar and our own wellbeing in advance of the procedure. As a small example, the sink in his room had been covered over, so that he never even knew it existed, saving on stress in the attempt to keep him fasting.
The staff took the wise decision to suspend all unnecessary routine observations on Askar, which would only have escalated his stress levels, so after taking initial baseline observations, they sent us off to town with him, which was surreal and such a release. We walked around St Stephen’s Green and had supper in Bewleys, joking about how often we would normally be out in a public place with Askar on a Monday evening.
On the morning of the procedure, the anaesthesist chose a different method and timing of sedation in an attempt to have Askar as relaxed as possible. Askar likes travelling in shopping trolleys, so was happy to get up on the hospital trolley for the trip to the Cath Lab.
In Askar’s case, despite sedation, he fought the anaesthetic every inch of the way. Cardiologist Kevin Walsh carried out a successful intervention on Askar and hospital dentist, Paddy Fleming, kindly gave his time to examine Askar’s teeth, while he was still under anaesthetic.
Again protocol was suspended to allow me into the recovery room prior to Askar’s waking up. The staff decided that once Askar had stabilised, he could be wheeled back to St Bridget’s Ward to wake up in his own bed.
The day wasn’t incident free and when Askar woke up, he got very distressed about the bandage, which was tightly wound around the groin area, so the decision was taken that as he hadn’t bled at that stage, it could be removed.
Worrying about how Askar would cope with his hospital stay in a sense masked our anxiety about the cardiac procedure, but the confidence, expertise and humour displayed by the staff in Crumlin made a difficult situation so much easier for themselves, for other patients, for us and for our son.
